Announcement

Collapse
No announcement yet.

Coming up for air

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Coming up for air

    I haven’t posted for a while as things have been a bit hectic here and Neil’s deterioration has been relentless. It feels like a domino effect. No speech, no swallow, PEG fed bolus feeds/meds, no function in left arm, now limited use of right arm/hand and to top it off, he has completely gone “off his legs”.

    In April, after many falls, I asked the OT about a full body hoist but after her “assessment”, he did not fulfil the criteria, because obviously, you have to be in a crisis, before getting equipment! Which is exactly what happened 2 weeks later, when he was unable to weight bear. I was told it would take 48hours to get a hoist but because of the weekend it would be 4 days! When I asked “how do we cope meantime?”. “Keep him in bed and pad him up”! Needless, to say I ripped her head off. I felt so angry, especially as I had tried to be forward thinking and a step ahead of this disease. Where is the dignity and compassion? Is this actually caring for the dying in the community? I have since had a virtual meeting with the senior OT to ensure systems are put in place and tried to explain the unpredictability of MND, so hopefully, in the future no one has to go through what we have had to go through.

    Anyway, got an emergency hoist within 3 hours, emergency carers twice a day, with me doing it in between. So much for the 5 page risk assessment which says 2 people to operate! Carers now coming 3 times a day and awaiting package of care.

    The last 6 weeks have been so stressful and we now have lightweight wheelchair, power chair, freeway commode/shower chair, gerebit toilet (although the chair didn’t sit properly over the toilet, so had to get a joiner to cut into the pipe box!), and had to use ordinary commode, emergency hoist, OT department hoist, quotes for ceiling track hoists, physio for left arm and now has orthopaedic sling, district nurse, wheelchair people, GP, MND specialist nurse, key worker, dietician to change feed, eye gaze appointments. All whilst my kids were sitting their final school exams!

    And to top it off, Cognitive test shows signs of FTD. As if MND isn’t enough, lets just throw a bit of dementia into the mix!

    As a nurse, I knew this was going to be a tough journey but had not quite appreciated how much. Apologies for the long post.

    #2
    Hi Lynda,
    being a nurse at least arms you with skills and no how on how to get support for your husband,Better still insisting on help seems to have triggered health professionals to come on board.Hope you and Neil get the services and assistance to make life more manageable.
    Best wishes
    Mary

    Comment


      #3
      Lynda I do hope some have learnt lessons from this. Mnd is bad enough without those that we depend on letting us down.

      lots of love to you and Neil
      Denise xxx
      when i can think of something profound i will update this.

      Comment


        #4
        Sorry you and Neil been through such a tough time Lynda. People have no conception of the frustrations and difficulties people with mnd have to face x

        Comment


          #5
          Lynda That sounds coompletely horrendous. When my mum was dying, over 40 years ago, the first social care lady was very sympathetic, but achieved very litlle. Then a rathr prissy man took over, within a few weeks we had the possom machine, and other aids that really help, less sympathy but more help. Not spell checking, takes me too long!
          Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

          Comment


            #6
            Blimey Lynda its all been happening, but why on earth should it have gotten to that...............it Ps me off when you have to get mad to get something done, having to have a "tone" and banging the table, seriously it does,
            Husband Albert diagnosed PMA Feb 21

            Comment


              #7
              What a trial you’ve both been through Lynda. No apology needed for posting a good explanation, and well done you for having the confidence to shout out for what you know is ‘good care’ and ought to have been in place sooner. I hope that you feel better now.

              Yours’d think that learning about MND would be on relevant teams schedules. But sadly not yet. Just shows you what can be done quickly when per put their mind to it.

              I feel for anybody who’s timid going throughout this same. Lynne x
              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

              I'm staying positive and taking each day as it comes.

              Comment


                #8
                Thank you everyone. It’s been a tough couple of months to see him deteriorate in front of our eyes. We used to be such a good team but I’ve relegated him to the bench! Still have to have a laugh every day. Xx

                Comment


                  #9
                  Originally posted by Lynda View Post
                  Thank you everyone. It’s been a tough couple of months to see him deteriorate in front of our eyes. We used to be such a good team but I’ve relegated him to the bench! Still have to have a laugh every day. Xx
                  And finding something to laugh at is so important. Take care

                  Richard
                  Richard

                  Comment


                    #10
                    A good rant always helps, well it does me anyways. 😁😘🤗😍xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                    Comment


                      #11
                      It’s always good to get things off your chest! That’s what we’re here for!
                      all the best x

                      Comment


                        #12
                        I've definitely had a lot to say the last few days. This morning a dry bed. Yippee I thought then the cat was sick all over his bed. 😩
                        when i can think of something profound i will update this.

                        Comment


                          #13
                          Im shocked that in the 40! years since the association began nhs services still !aren't forward thinking, its 21 years since my mam died ,and it's like time stopped ,still no organisation, she was a solicitor held !nothing!back, very expressive eyes, I could imagine what she's think of social!services !.

                          Comment


                            #14
                            Indeed Streetwise. The notion that the Government has your back when you get MND is for the birds! It is more like everyone for themselves. After all, any sponger can claim that they have MND and Government are aware of this.

                            It does give me ideas for my comprehensive care app however. Shopping is just the start of our online existence!
                            Copyright Graham

                            Comment


                              #15
                              Originally posted by Graham View Post
                              After all, any sponger can claim that they have MND and Government are aware of this.
                              Surely your Gov. requires proper diagnosis from a professional body?

                              Comment

                              Working...
                              X